CEV and post lockdown UK: As we near the so called... - PMRGCAuk

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CEV and post lockdown UK

Bachfugue profile image
36 Replies

As we near the so called ‘Freedom Day’ in the UK when all previous lockdown measures are set aside we have to think about protecting ourselves. Double vaxed - yes; care with who we meet - yes but have no idea who those we meet have had contact with; continue wearing a mask when shopping - yes. Yet I am beginning to feel vulnerable and wonder if we ought to be shielding.

Is PMR a condition listed under CEV under the auspices of ‘taking immunosuppressant therapies sufficient to significantly increase the risk of infection’ ?

I am currently taking 8mg Pred daily over two years since initial diagnosis.

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Bachfugue profile image
Bachfugue
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36 Replies
MrsNails profile image
MrsNails

Hi Bachfugue

PMR is not a reason to be classed as CEV it’s more to do with our Medication, the level of Steroids & for how long you’ve been on them. The tipping factor into CEV is if you take a DMARD; a Biological or have other Medical Conditions.

There was Guidelines written last year & you were allocated points accordingly, l’ll see if l can locate it. But if you weren’t previously classed as Shielded you’re unlikely to be now but it’s entirely up to you to protect yourself in the best way you can.

rheumatology.org.uk/Portals...

Kind Regards

MrsN

PS Many people are feeling Vulnerable as the Restrictions are lifted so you are not alone in feeling this way.

Chart
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toMrsNails

Just located it as well 😊

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

This is what latest guidance says - as MrsNails says PMR is not specifically mentioned - but steroids are immune suppressants - so you are included depending on time on them and dose-

people on immunosuppression therapies sufficient to significantly increase risk of infection”

Bachfugue profile image
Bachfugue in reply toDorsetLady

Thanks Dorset Lady. Do we have more info on what is ….. ‘ sufficient to significantly increase risk of infection”….. ?

Is there a ‘dose’ somewhere in the literature?

PMRpro profile image
PMRproAmbassador in reply toBachfugue

I think they eventually decided on over 5mg long term - so that covers most of us.

Bachfugue profile image
Bachfugue in reply toPMRpro

Thanks PMRpro. They suggest shielding for those taking >20mg Pred daily for > than four weeks or those taking >5mg for more weeks with one other immunosuppressive drug (of which there is a list). So >5mg daily on its own doesn’t require shielding but self isolate/ maintain distance at our discretion. How does everyone feel about this in practice? I plan on working full time in September at a university with some student contact. Difficult to plan ahead.

PMRpro profile image
PMRproAmbassador in reply toBachfugue

Sorry - brain wasn't in gear ...

Depends on how you look at the jag - anything over 5mg there may suppress the immune reaction. But they don't really know yet ...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

This link should give you same as MrsNails has photo’d above -

rheumatology.org.uk/Portals...

If it doesn’t work as expected - see this - which details those

Patients to shield

COVID-19 - Identifying patients for shielding in England

Patients to self-isolate or maintain social distance at their discretion

• Corticosteroid dose of ≥20mg (0.5mg/kg) prednisolone (or equivalent) per day for more than four weeks

• Cyclophosphamide at any dose orally or within last six months IV

• Corticosteroid dose of ≥5mg prednisolone (or equivalent) per day for more than four weeks plus at least one other immunosuppressive medication*, biologic/ monoclonal** or small molecule immunosuppressant (e.g. JAK inhibitors)***

• Any two agents among immunosuppressive medications, biologics/monoclonals** or small molecule immunosuppressants with any co-morbidity****

Note - it was published last year at beginning of COVID.

Bachfugue profile image
Bachfugue in reply toDorsetLady

Thanks for this and the link to the info we need. Thanks too to MrsNails but I couldn’t read the photo clearly.

Highlandtiger profile image
Highlandtiger

As an aside whoever decided to call it 'Freedom Day' should be thoroughly ashamed of themselves in my view!

Bachfugue profile image
Bachfugue in reply toHighlandtiger

I agree. Not sure who coined the term. More than silly. It may well turn round and bite them.

Bcol profile image
Bcol in reply toBachfugue

Perhaps the term was for the virus as it will now have total freedom to run amok. We might not be officially shielding any more but little will be changing in this household.

PMRpro profile image
PMRproAmbassador in reply toBcol

Does sound this morning as if there is a bit of backpedalling going on - and Chris Whitty has finally spoken out. Though still talking to other scientists in the terms he's using and the politicians really don't get that when we say things we are being VERY British and reticent ...

My daughter works in A&E - 11 hour waiting times already. She says it is relentless and people need to be admitted. I do wonder how much is due to neglected problems that they simply haven't been able to see GPs about months ago.

Just listening to an interview with nightclub owners "It's young people who haven't had their jabs, we'll have hand sanitisation points, watch out for people who are unwell, no masks - but we'll be making sure it is as safe as possible ..." Well there's a non sequitur if I heard one! Oh yes - "and the football's been such a success"

Bachfugue profile image
Bachfugue in reply toPMRpro

It’s different ‘worlds’ isn’t it?? And will Chris Whitty’s voice be heard amongst the nightclub owners etc.? And even more important by BJ and his Gov? It appears to be an experiment with horrendous consequences if it doesn’t stay within the boundaries of their remit. How the NHS will cope and as you say the challenges in A&E Depts too. Putting so much responsibility on the individual rather than coming together as a collective is bound to have direct consequences.

TURQ8 profile image
TURQ8 in reply toBachfugue

The Sun, the mail and BJ. All equally moronic.

Viv54 profile image
Viv54 in reply toHighlandtiger

Could not agree more !! Im going to carry on as before , Mask space hands etc !

Doraflora profile image
Doraflora in reply toHighlandtiger

I agree, highland tiger. Freedom? Nah! It’s going to be utter carnage. I shall definitely be maintaining low profile everywhere and avoiding big crowds.

As an aside to our rising Covid numbers, my daughter in Melbourne has just gone into a 5th lockdown as they have 14 Covid cases. Just 14! Wham, their government gets down to things immediately; no pussyfooting about.

diana1998 profile image
diana1998 in reply toDoraflora

But their lockdowns are very short aren't they. Like 2 weeks in some cities

Doraflora profile image
Doraflora in reply todiana1998

Well, one lockdown (probably the first) was about 3.5 months; the rest shorter. this last fifth one will only have been for about a week. But They won’t end it though if they’re not happy.

PMRpro profile image
PMRproAmbassador in reply toDoraflora

What gets me is the fact if I came to the UK I'd have to isolate - we have low numbers though rising, 20 in the region today and mostly found by rapid tests, were in single figures last week - Italy as a whole has under a thousand a day. But people expect to come here on holiday from the UK with 45,000 cases a day!

In the paper here now - hundreds of young Italians headed for Malta, Greece, Dubai and other places for holidays/study trips and are now stuck there as they have tested positive or were in contact so can't travel home,

Highlandtiger profile image
Highlandtiger in reply toPMRpro

Searching for logic is probably a pointless exercise...

Constance13 profile image
Constance13 in reply toHighlandtiger

"Logic" not much around in the UK at the moment. Well not with a government who have NO IDEA how to deal with today's increase in Covid numbers!!!!

Doraflora profile image
Doraflora in reply toConstance13

Well, I was happy with how things were being run at first, constance13. But when numbers are drastically increasing, I’m astounded that restrictions will be lifted! There’ll be another lockdown before too long.

Constance13 profile image
Constance13 in reply toDoraflora

Yes, there was great hope at first numbers fell dramatically, injections rising and rising then - ?? Whatever has happened to common sense?

Doraflora profile image
Doraflora in reply toConstance13

The mind boggles.

Doraflora profile image
Doraflora in reply toPMRpro

It’s reached over 50,000 in the uk today, PMRpro. Madness!

PMRpro profile image
PMRproAmbassador in reply toDoraflora

And they are debating putting France on the red list - it's hardly credible is it?

Telian profile image
Telian in reply toDoraflora

My son lives in Brisbane and not long back they had lockdown due to ONE case.?

Doraflora profile image
Doraflora in reply toTelian

That’s the way to contain it!

Susan1705 profile image
Susan1705

I was on 15mg at the start of the pandemic and 10mg in the September 2020 when I went back to college to teach fulltime. Advice from GP and rheumatologist was as long as I socially distanced I could work. Did not work in offices and all students wore a mask in my classes and I had a 2 metres clear section at the front. Currently on 40mg of pred + methotrexate, should be down to 20mg by September, the advice is to avoid meeting people indoors, especially people I don't normally mix with. I will be cautious!!

Bachfugue profile image
Bachfugue in reply toSusan1705

Thanks for this Susan1705.

You didn’t say why you had to increase from 10mg to 40mg. Was this a GCA diagnosis? And will you continue to teach full time? It’s a huge commitment in uncertain times.

My students will be mostly international so not sure if they will require double vaccinations before entry into the UK. My university is pretty clued up with online teaching often taking precedence. But the plan is to hold weekly face to face seminars (and socially distanced). And the commuting may well be a challenge. In London as it is, many remain unmasked.

Susan1705 profile image
Susan1705 in reply toBachfugue

Hi, yes diagnosed with GCA last month and on half days. Should be good for September. Online teaching has been a bonus, I taught quite a bit online when the number of cases increased in November last year with the students in the class and me remote, and fortunately college enforced mask wearing throughout the pandemic. Hope to carry on full time for a couple more years before I retire!

Hildalew profile image
Hildalew

I will continue to wear a mask as a reminder to me and to others that the virus is still about and as protection for other people. I will maintain social distancing and will not use public transport if I cannot find a seat, or a standing place, distant enough from non-mask wearers. If this proves impracticable I guess I will have to stop travelling by public transport (I'm not doing much travelling at the moment and was looking forward to doing more.) and work out if I can afford to pay a mask-wearing, vaccinated, person in a thoroughly cleaned vehicle to take me where-ever I need to go - meanwhile looking to see whether I can find and afford a properly hospital-level mask which does give protection from the virus being transmitted by non -mask wearers.

I will use shops which maintain social distancing and where staff wear masks and (preferably where customers are wearing masks.

And I suppose that is how my life will continue for ever.

Bachfugue profile image
Bachfugue in reply toHildalew

Thanks Hildalew, this is such a sensible option and one that many of us (those not working outside the home) may eventually have to take.

Doraflora profile image
Doraflora in reply toHildalew

I’m relieved to see that some of our local shops/cafes etc are still going to continue their strict Covid measures. They’re the ones that will get our continued support.

diana1998 profile image
diana1998

Rightly or wrongly, I feel protected by steroids. Haven't had a cold or cough for over 6 years in spite of hubby having 2 bad chest infections, last one in January 2020. With hindsight he thinks it was covid... But maybe not.May have to eat words as we have big wedding (over 100) on 31st. Hoping it will be entirely outside. Tapered slowly don to 3mg.

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